At Understanding Patient Data, we strongly believe that everyone should be able to understand how patient data is used. But we don’t always know the best way to communicate these messages to different groups, which is why co-production is so critical. 

What is co-production?

Co-production means involving people who will be affected by the output, such as materials or decision-making, in the creation of those outputs. This ensures that we hear directly from those groups rather than making guesses or assumptions about what they want and need.  

Co-production happens well when everyone involved in the activity works together and recognises each other as being equally valuable. Lived experience and learned knowledge co-exist and are shared equally regardless of one’s role in the work, such as tutor, interpreter, clinical or research practitioner, family carer or invited participant. Co-production workshops are thus designed to remove any power imbalances or hierarchies to ensure equality of contribution.  

An example of co-production

We worked with Thinklusive to involve the intended audience in the creation of easy-read guides (link), so that we could be more confident that the information in the guides is accessible and presented in formats that give more people an equal opportunity to understand it.  

Inclusive co-production is more than just about its outputs, though. It also involves ensuring accessibility in the opportunity to participate in the co-production work itself. For example, the workshops for the easy-read guides were undertaken in locations easily accessible by public transport and that were familiar to and comfortable for participants with different needs.  

How do people feel about co-production?

“What I liked about the session is that it is interactive, got to meet a lot of different people, there’s a lot of information that I didn’t know before that, that I was glad I learned.” 
Participant from Leicester

 “Being part of making things like this easy-read will hopefully help someone else have a better outcome in my situation. I also know when you are faced with that pressure of life and death all sense goes out the window so easy read would be good for just anyone in my opinion." 
Participant from Suffolk

A guide to co-production

Building on the learning from developing easy-read guides, Thinklusive have developed a guide to co-producing accessible information to support health literacy. The guide is short and shares seven key learnings from the easy-read project, and Thinklusive's wider expertise on co-creation. 

Here are the easy-read guides, as well as a talking text video where an autistic narrator reads out the guide: